So, I had my annual MRI and then visited with the neurosurgeon the other day. He told me I was doing so well that I don't need an annual MRI, I only need one every two years for right now. He said they still are unsure what caused the abnormal cells in my brain, but that the worst case scenario was that they were a slow-growing, pre-cancerous bunch of cells. The types he referred to he said take about 15 years to recur generally. He said if I start having a bunch of seizures I need to get checked out, but otherwise not to worry. He pointed out rather nonchalantly that if that area starts to grow or become a problem, he could go back and take twice as much out as last time - and that I would probably not notice any problems and would be back to work right away. Seems funny to me that he talks about brain surgery like it's no big deal. Great news though. I'm really happy to be so much more active and not on any medication. Hadn't been like this for years prior to right medial temporal lobectomy.
Back in high school I remember so many people saying they were bad with names, but they never would forget a face. I thought, hmm wouldn't that be nice to remember faces so easily. When I was younger I think I remembered them more easily, but as I got older I had more and more problems remembering faces. After my surgery I noticed the problem was much worse than before. People I had known for several months, I could still recognize. People that I had known only a couple weeks before surgery, or anytime after the surgery, I could not recognize. I am good with voices, so I would quickly memorize a person's voice and use that to help recognize a person. I also make an effort to remember a person's body type and height, hair color, and things like that to help me remember them.
So many people's faces just look the same to me, until I know them for several months. It turns out that there is an area called the fusiform gyrus in the temporal lobes of the brain. Since my right medial temporal lobe was removed with the lobectomy (to correct seizures), I am missing the right fusiform gyrus. Somehow I am still able to learn faces, it just takes a really long time. Another difference is that I can't mentally picture a face. I remember as a child being able to picture a face whenever I wished, but I no longer have that ability. So, for example, I recognize my wife when I see her, but am unable to visualize her face even though we have been married for several years.
Anybody out there have experience with facial blindness? Post a comment about it.
It's been a little over 4 weeks since my right medial temporal lobectomy. I understand everything went well in surgery. The nurse practitioner called a few days after the surgery and told me that what they removed was not a neoplasm. I take that to mean that it was not cancerous at all. She said the neurosurgeon will explain the results in more detail at my follow-up visit.
I follow up with the neurosurgeon next week and am anxious to get back to normal. I think I underestimated the amount of fatigue I would have. The headaches have varied, but are getting less frequent and less intense each day. In fact, I find that I don't take much of the pain medication I was prescribed. What is generally worse than the headaches is the pain in the jaw on the side the surgery was done. For some reason it hurts to open my mouth very wide, which makes eating uncomfortable. Chewing doesn't hurt very much, just the actual opening of the mouth.
At night I have been staying awake until at least 1am and sometimes 3am. Granted, I am sleeping in a little later than usual in the mornings, but it still is odd that I have to lay in bed for so many hours before getting tired.
My vision is improving. I still have some double-vision. It is most noticeable in the lower one-third of my field of vision. The upper fields are almost unaffected. The vision is improving each day it seems. I do find myself being more careful with how I walk, doing so slowly and deliberately to avoid falling.
My sense of smell and taste I seems to have been effected for the worse, but that is something I think I can learn to live with.
Overall I have been very blessed with so many family, friends and wonderful coworkers thinking and praying for me. I don't seem to have any problems speaking English or Spanish, as I have been bilingual for about half of my life. I do have some stuttering, and I am wondering if that is because of the Keppra they put me on to prevent seizures. I had a stuttering problem at times when I was on Keppra for several years, but never had one growing up. I am beginning to play the piano and violin again. I don't really notice any deficit with that either. It is more difficult than usual to play due to double-vision and just not feeling great in general. Those of you who play a musical instrument know that your playing is not the best when your body is not running at 100%. I really think I will regain all of my playing abilities back as I heal and practice a little.
Besides being told that they didn't find cancer, the next best news has been no seizures. This is a big deal since I usually have at least 15 per month. I have not had a single seizure since surgery! The first few days after surgery, and a couple of other times, I felt like I may have a seizure coming on in a while, but never did have one. I'm really hopeful that I can be seizure free again and come off the small amount of Keppra that I am on. If all goes well I could be working nights and driving again someday. For now, I just can't wait to get back to work. I want to feel like I'm doing something productive
Thanks to everyone for you thoughts and prayers!
Before Brain Surgery side view.
Before Brain Surgery Front View
After Brain Surgery, head dressing.
After Brain Surgery, head dressing.
After Brain Surgery, head dressing
After Surgery, Side View without bandage. I'm thinking the scar will start to look more defined with time. I'm considering growing a beard and having it longer than the hair on my head. The neurosurgeon said he put two small plates in my head. I was upset to learn that they aren't magnetic. I was thinking of neat tricks I could show my kids if the plates were magnetic.
After Surgery, Front View without bandage. The black eye is from blood pooling. It's funny to say that my wife beats me though. The mark in the front of my forehead is from a brace that held my head still during surgery. There are 2 more such marks on the back of my head.
Maybe I forgot to mention the name of my brain surgeon. It's Doctor House. No joke, that's his real name. It always makes people laugh when I tell them that. He doesn't seem nearly as heartless or sarcastic as the t.v. character. In fact his bedside manner and professionalism make him not at all like the t.v. character.
We are proceeding to surgery without the WADA test. I was wondering why that is and I asked my neurosurgeon's nurse practitioner. She told me it isn't necessary since they already know exactly where they are going in my brain and they won't mess with the areas that could involve speech. The WADA test is typically done prior to brain surgeries partially to verify which side of the brain involves speech. If the wrong areas are damaged a person could be unable to speak or even understand written or spoken words. What a scary prospect that would be. It is assuring knowing that they won't mess with that area, even though my speech is likely on the left and they are operating on the right side of my brain.
Being a pianist and violinist, I am wondering what affect the surgery will have on my playing abilities. I would be interested to find other musicians that have had a right medial temporal lobectomy. At this point I am willing to proceed to surgery even at risk of harming my musical abilities. It just wouldn't make sense not to cut out what is likely a low grade glioma. The risks of leaving it intact would be too great.
My family has decided to celebrate Christmas early this year, since I will get out of the hospital only a few days before Christmas and probably not in any shape to enjoy the holidays. When I had my colectomy in 2007, I specifically waited until after the holidays to schedule surgery, but ulcerative colitis was more of a great inconvenience, and not cancerous.
I am anxious to return to work as soon as possible after surgery. With any luck I could be seizure free the rest of my life. Wouldn't it be nice to make more money next year than I ever have before, and not have to spend much of it on medical bills?
Clip Holverson Jr. began having seizures at the age of 30, and was diagnosed with epilepsy. Follow this blog to read his story.